At present, there is no specific medicine for chubby Willie syndrome, and growth hormone is the only medical method known to improve its symptoms, and the treatment cost is more than 25 thousand yuan per year. It is estimated that there are about 654.38 million related patients in China at present, and tens of thousands of families are facing a heavy medical burden.
He has no wings, but it doesn't affect that he is an angel.
Yang Yang (a pseudonym) is a clever and sensible baby, but since birth, he has been quiet and unwilling to drink milk.
Born in 2009, he has been misdiagnosed for 12 years.
On the day when Yang Yang was born, my mother still remembered how happy she was as a mother. The child's completely motionless "high cold" performance seems to say: "The outside world is wonderful, what does it have to do with me?"
What an interesting child, she thought.
Yang Yang's abnormality has gradually aroused the vigilance of mothers and medical staff.
Not long after the child was born, he got pneumonia. Due to the limited medical conditions, they transferred their children to Baoding Maternal and Child Related Specialized Hospital. During their stay in hospital, they did various tests and failed to diagnose the cause.
The child's father took him to the downtown hospital for routine examination and transferred him to another hospital for treatment. However, due to the gloomy situation in Yang Yang, his family received many critical notices.
In the worst case, the doctor told the parents: as long as the baby is alive, feed it for one day, and if you think too much, you will be tired.
Great sorrow without tears, silent smile. Like a sudden heartbreak, in the face of illness, as ordinary people, we are so powerless.
A newborn baby should lie in its mother's arms and enjoy delicious breast milk, but Yang Yang's appetite at that stage was poor.
Children can only eat a little at a time. How much is that?
It's half of a pen cap.
What parents don't feel bad about their children in their arms?
Because of the child's physical problems, he still lay in the incubator for a month.
During that time, my mother cried her eyes out.
Mother can't seem to find a way to talk about pressure except to dry her tears. This situation is superimposed day after day, and finally it becomes a straw. Slowly, it will crush this family.
With the growth of Yang Yang's age, the family found that the baby's three years old was like a watershed. Before that, children had a bad appetite, refused to eat, and even were not interested in complementary food. But after the age of three, children's appetite is so big that they don't care about their standard appetite.
Yang Yang's communication skills are not strong. He will take away all the toys of his peers, so in the eyes of his neighbors, he has become a naughty and difficult-to-discipline bad doll.
Stop labeling him.
He is not what you call a bad boy.
Is Yang Yang really a bad boy?
He's not. He is a very clever and sensible little angel.
Yang Yang's mother said, "If only he could be a cook in the future!
13 years old, he often cooks breakfast for his father, which is very delicious. "
Yao Ming is a baby who respects his parents very much. How can he be a bad boy in the eyes of others?
The baby is just sick. He is not good at words, slow in action, and lacks in speaking and running compared with his peers. But he didn't mean to. If he had a choice, how could he want to be a bad boy in the eyes of others?
Before 1 1 year, Yang Yang's family didn't know what the disease was. Yang Yang's mother has been giving her son all kinds of medical training. But all her efforts have no direction at first, let alone where is the end.
On 202 1, Yang Yang went to hospitals of all sizes for examination. Finally, the doctor gave Yang Yang a mitochondrial and genetic examination, and then helped the child to diagnose chubby Willie syndrome.
This is a rare disease with a probability of 15000 ~ 25000. It is suffocating that there is no specific medicine for this disease, only growth hormone can effectively improve children's symptoms, but in most parts of China, growth hormone has not been included in medical insurance.
Medical expenses, which will become another mountain for Yang Yang's family.
At first, Yang Yang's family conditions were not bad, and his parents opened a clothing factory.
Since the child became ill, the parents paid all their attention to him, so the small factory was forced to close.
The child's father works as a temporary worker outside, and often takes them to major hospitals in Beijing and Baoding for examination and treatment. In recent years, their foreign debt has exceeded 300,000 yuan.
In the most difficult time, my mother also took some "relief money" from home.
In the bitter days, you are my sugar.
Life is hard, but the children are innocent.
Mother said, "Although I have given him everything I can, I don't know how to really help him."
Today, Yang Yang is 13 years old. It's hard to imagine what children's parents are like under day-to-day psychological pressure. Mother's way to talk about pressure is to go to the suburban Woods far away from the community and shout a few times.
Reality has never tolerated this family. Yang Yang, who is growing up, needs to go to school.
At school, because of illness, I can't listen carefully in class, and always go to bed as soon as class begins. Occasionally, he will prick the little hand of the female classmate sitting behind, grab other partners' toys, snacks and pencils, and borrow classmates' money to buy snacks. Every time I borrow money, I buy food and don't tell the adults at home.
When no one picks him up after school, Yang Yang will ask other students for something to eat. Whether he knows it or not, he is not aware of the problem. He has no money with him, and his classmates feel sorry for him and will lend a helping hand.
In fact, Yang Yang cannot do without the care of his family.
As parents, parents began to feel confused about their children's schooling and future employment.
The child is still young, and the road is still long.
Who dares to think about the future?
At the suggestion of her family, Yang Yang's mother became pregnant with a second child. The arrival of new life in 2022 eased the depressed atmosphere of this family, and their mood gradually got a solution.
Every time I think of Dabao, my mother can't help but take a look at the scenery outside the window occasionally. She is very lost and helpless.
She wondered whether Bauer's arrival would hurt Yang Yang's heart to some extent.
Yang Yang, you are still very young, and your angel wings are not exposed. One day you will fly in the happy sky and see the love and blessings of thousands of people in the world.
We hope that all regions will incorporate growth hormone into medical insurance as soon as possible, and we also hope that society and schools will give more respect and care to fewer babies.